Happy New Year!

I haven't blogged in a very long time... Basically for over a half a year I have left my blog unattended.  Guess what?  

That is changing this year! 

I have told you that I wasn't ready to share yet, but now I am.  There have  been many reasons for this, but the biggest one is my lack of health.  Let's make a long story short;  the doctors have been testing me, referring me, and testing me some more.  I would have thought I had given more blood that I have to give, but they kept taking more!  Finally, they have a diagnosis, and it isn't good - but I really don't know what that means... I will try to explain.

I have an extremely rare disease called Idiopathic CD4+ Lymphocytopenia.  There are literally dozens of people that have it - not hundreds.  I am happy to say that after dozens of tests that I positively do not have AIDS/HIV, but I do have something that AIDS/HIV patients suffer with - a serious lack of t-cells in my body.  The t-cells that I am missing would recognize dangers like flu, colds, viruses, infections, cancers and such in my body - and they would tell the other cells to fight those sickly germs off!  Instead, because of my lack of t-cells, those nasty little germs just sit in my body and ravage it and nothing tells them to get busy.  I envision them all sitting back having cocktails... 

There are so few people with Idiopathic CD4+ Lymphocytopenia that the medical community knows very little about it.  There is no cure, no help, there are no support groups, no medical trials and only one clinical trail going on.  It is in Bethesda, Maryland.  They are only taking all of our tests and symptoms in a pile and trying to find a common denominator - and yes, I have applied to that clinical.  But they are not giving trials of medicines or hope for cures...

Reading about the disease scares the garbage out of me.  I find hope in some articles:  This article says "In contrast to the CD4+ cell depletion caused by HIV, patients with idiopathic CD4+ Lymphocytopenia generally have a good prognosis. The decline in the CD4+ T-cells in patients with ICL is generally slower than that seen in HIV-infected patients."   

And then the realization sets in:  My CD4+ cannot deplete anymore, because my CD4+ count is at at 64. 

Critical is less than 300.  :-(

I try to research my diagnosis, but all the medical terms are way over my head.  I get morsels of information that give me clues; I have to worry about dying from some stupid little infection, that a lack of t-cells are not life sustaining (thankfully, I have only read that in a few places and surely they are not talking about MY t-cells, right?)  I have read that they can regenerate, then my Dr says I have to HAVE t-cells to regenerate - and she tells me I don't and they won't.  

One of my Drs said "live a long life" when Steve asked him what long term that meant to us... I am wondering where he sees that, but I am waiting for it to happen!

I asked about wearing a mask to help with germs. Drs say that I would only be protecting others from getting what I have - and I am not contagious.  Germs are everywhere; in breathing, touching, through pores, tears...  yada yada... so a mask is out.

I asked about diet... again, my Dr says I have to have t-cells to regenerate - and I don't. But, it cannot hurt, right?

My Drs both said it is genetic - aunts, uncles, cousins, are you listening?  They are fairly certain that my father died from the same diseases; an infection that he caught in 1993 - one that commonly attacks people with low t-cells is what killed him.  If you are related to me, you need to know that if your lymphocytes are low, you need the Dr to test the subsets... the t-cells specifically.  All of my immunoglobulins were normal - that is very important for them to know.

With all of the research that I could not find, I finally thought that since my symptoms are similar to those with HIV, (remember, I don't have HIV) I should go to an AIDS site and read there.  That was definitely not a good idea.  Scared the bejeebers out of me when I saw where my count was!! 

It is an immunity disease, I know that much.  Not AUTO immune disease... However, IgIV's will not help me the Drs have said.  That was my one hope... but hearing the ones that have to take IgIV's and dealing with all the side effects, I don't know that I would want them anyway.  

So I don't know what this diagnosis means for me other than both Drs have said it is very serious and both have released me from their care - there is nothing they can do except treat me immediately for infections as they come up - and they will do that.

Other than that, they can be of no help.

Apparently, there is nothing I can do either.

 EXCEPT live life - and BLOG!

And I am going to keep up with it this year!  I LOVE blogging and miss the heck out of it.  

So here my list of important list of things I gotta do in 2014:

1   Blog my life (sorry if it bores you... we live on a farm and it is pretty relaxed here)
2.  Get digital pictures sorted and backed up twice 
     (most are backed up, I just need to really organize).
3.  Get all of my genealogy scanned and sorted
4.  Share the genealogy with all of our family
5.  SCRAPBOOK! those printed pictures and important events
6.  Make quilts/sew/laugh with friends
7.  Eat healthier
8.  Vacation more
9.  Play more
10. Live healthy
11. Hold on to those 64 little t-cells that I DO have!!

And plan my daily walk with God; studying His word, His life plan for me and reading His story again and again... and finding hope.  

Because in Him, all things are possible.

Happy New Year, folks!  

I am BACK!